I just saw this shared in an Asperger’s group on facebook, and I admit I got a little teary. When I watched Frozen, I did think a few lines of “Let it Go” reflected the Aspie experience (though I prefer “Reindeers are Better than People”). This treasure of a young lady took it one step further. I would just love to give her a hug!
On this lovely Sunday evening I was trying to decide how to spend my last few relaxing hours. My sister brought home our old N64, and I’ve been thinking about playing that. . . and I’ve been listening to some great Zelda remixes (from ocremix.org) while studying. . . so I had Ocarina of Time on the brain. I thought I’d share something I wrote a few years ago.
Back in 2008 I was a nanny, and the two little boys LOVED to watch me play my favorite old N64 games. They were occupied and happy, I was having fun, and I was getting paid. (Michael Scott might call that a win-win-win). One night I composed this and shared it on facebook as a note.
Tonight I was daydreaming about The Legend of Zelda. . . not surprising, since J. has me playing two hours a day. I finished Ocarina of Time, so now I’m playing Majora’s Mask. It’s a bit trickier, because it takes place over three “days,” after which you go back in time (with some of your items) and everything is reset to the first day.
Anyway, J. is really anxious for me to ride Epona (the horse) again. I read online that in order to get Epona, I have to help a girl at the ranch. To get to the ranch on day 1, I have to clear the road with a big bomb. To get the big bomb, I have to buy it in the town store, but first I have to complete a “training” thing. To get to the training place (which is miles away), I have to melt the ice blocking the door. To melt this ice, I need fire arrows. But to get the fire arrows, I have to beat up some baddie in the snow temple.
I was thinking about this, and the other items that I want to get that make the game easier/more fun. I was thinking about how annoying it was that they take so much effort to attain. But then I realized: that’s life. What we need to make it through, or to make the journey more enjoyable, isn’t given to us from the beginning. We have to save up our money to purchase it; we have to receive it as a gift; we have to earn the skill with practice. These things come from hard work and perseverance, friendship and powerful supernatural beings.
And besides, the challenges of attaining these things aren’t to be completed before “beginning” the game – they ARE the game. That is what living life is about – growth, becoming more Christ-like, improving our minds and relationships and skills.
Oh, and music has magical power. That’s another important Zelda lesson 😉
Pillows made for the boys, from the free patterns on fandominstitches.com
Today I was forced to confront scars I still have from my childhood experiences.
At work I have been stuck in a situation where I don’t agree with how a student is treated by the adults, yet I don’t feel like it is my place to address it. It isn’t my classroom (my agency emphasizes to us that we are guests in these classrooms), it isn’t my client. . . but my heart aches for this kid. A woman I work with was actually crying about it the other day.
One of my client’s visuals from last year.
Why haven’t I said anything?
1. It’s not my place; it’s not my classroom; it’s not my client.
2. I have “fear of man” issues.
3. I have no authority there.
4. I’ve tried modeling appropriate interventions and making subtle comments, which have been dismissed.
5. I give people the benefit of the doubt, and at first I wasn’t sure how this child was behaving in other settings, and if stricter interventions were maybe appropriate. (I’ve seen enough to say now that they are not.)
6. I don’t have the social skills to diplomatically start that kind of confrontation. . . I need to continue working with these people, and I am afraid of “rocking the boat” and creating a hostile environment.
7. I thought about printing out articles and leaving them in there, or filing a “bullying report” to the principal, but there are only a few adults who would know about it, so I couldn’t pull off a true anonymous action.
But then today, in considering talking to a teacher about it, I realized another deep reason.
I became painfully bored in school in 4th grade, so my parents and I decided to try the local Christian school, where we were told I would be able to work at my own pace. I wasn’t, actually. But worse than that, I was no longer with peers who had known me for years. I was the new kid in a small school where the kids had known each other since preschool and weren’t kind to outsiders. This is where the bullying began. It was never physical, just verbal and exclusion. Because I wasn’t getting much more academically out of it, we decided I’d go back to my public school to get re-established with my class before we went to the junior high, where the four elementary schools combine. Out on that blacktop play yard (that I had struggled to photograph years before) we had recess. And I saw three girls, one of whom had been my best friend in kindergarten, being teased. I had just come from a year of knowing what it felt like to be the outsider, to be teased. So I tried to stand up for them. And it backfired brilliantly. I became the fourth target, and I stayed one.
What does this have to do with today?
My 6th grade teacher was standing there. Every day. She was over by the door, watching the kickball game or chatting with another teacher. She was there. She should have seen. She should have heard. She did nothing. And I thought, “What good would it do to tell a grown-up? Won’t it just make it worse if they try to tell them to stop?” So I kept quiet. I rarely talked to my mom about what was going on, because she would have talked to the teacher, who I was afraid wouldn’t do enough and things would be worse instead of better.
Fast-forward. I still have no faith that the powers-that-be will help. I’m afraid it will just make it worse. I’m afraid.
A few weeks ago I read the Divergent Series. That could be another blog post, since I found the topics of genetics and society pertinent to the issue of autism. . . but for now I’ll just warn any other sensitive souls away from reading them. I did not like the ending. Regardless, today I was reminded of a quote from the Dauntless faction’s manifesto:
“We believe in ordinary acts of bravery, in the courage that drives one person to stand up for another.”
After months of getting extremely emotional about this situation, and even asking for prayer from my Bible Study group, I decided to talk to a trusted teacher. Not only do I greatly respect her, but I knew that she would agree that what was going on was not okay. Today my schedule opened up to chat with her while her students were at gym class. She validated my thoughts and feelings. She said she would ask another educator for advice about the situation without naming names, and she would let me know what the next step should be.
I’m finally taking another stand against bullies. But this time I have a teacher in my corner who is going to do something about it.
Woodstock Chimes has a special wind chime to raise money for autism research and treatment. This video is wonderful. It tells the story of Tyler, an autistic kiddo who LOVES wind chimes. I really appreciated how positive the autism expert and Tyler’s parents are about autism.
Also, you can hear sound clips of all of the company’s chimes on their website, which I found to be really fun!
For the last several months I’ve been experiencing a deep crisis of faith. Not my Christian faith, but rather my faith in what I do as a TSS. For those of you unfamiliar with the TSS position, it stands for Therapeutic Support Staff. Most of the children served by my agency (and all the kids that I have worked with) are on the autism spectrum, though there are other diagnoses/issues that can cause a recommendation for services. Here’s how it works: after an intake evaluation, a child may get a BSC, who is a master’s level clinician. The BSC consults with the caregivers and school (if relevant) and develops a treatment plan full of objectives and interventions. Then the TSS, a bachelor’s level therapist, implements the interventions (while teaching caregivers/teachers to use them) and collects data and documentation (the bane of my existence).
Some tools of the trade – computer for documentation, a variety of ear protection, visuals, fidget toys, a pencil for writing a flexible visual schedule, highlighter to color in a smiley chart.
I worked for another agency for a year and nine months before reaching burnout point and moving home, and I have worked for this agency just as long. I’ve always been really good at my job – at least, especially good at the working-with-the-kids part, because I *get* them and can tell what’s going on with them before most other adults in their lives. I always figured it was because I have empathy for autistic kids because of my cousins, and because I’m a highly sensitive person myself, and because I’ve studied a lot about autism. But last summer when I realized I have Asperger’s, I started to not only empathize with and understand the kids but also identify with them. And in many ways that has made my job much harder. One day I exclaimed in frustration, “I feel like I’m disguised, helping those adults to oppress my people!” My mom chuckled, but it’s a real feeling.
A big component in the development of my Crisis of Faith was reading a few blog posts as I was exploring my own self-diagnosis.
[Warning – this post is going to involve a lot of “recommended reading.” I’ll try to summarize the key idea of each link I post, but they are all worth reading.]
One of the first was “Quiet Hands.” As I read this post, my heart sank. How many times have I, following the leads of the adults in charge at school, tried to suppress my clients’ stims? Sure, I’ve suggested things like fidget toys as alternatives; and sure, most of my main client’s hand movements are accompanied by disruptive sound effects (think Angry Birds; that’s the game he’s usually playing in his head while stimming with his hands). But I’ve also used this visual:
Which brings me to the next blog, which I think is actually where I saw the previous link. “On Failing Kindergarten,” by Alyssa on Yes, That Too. I spent all last year, and most of this one, watching the staff in autism support rooms trying to make kids follow these rules. I’ve felt frustrated with them making a kid sit with his feet on the floor in front of him, when the kid is trying to sit on his foot or sit cross-legged in the chair- like I do. I’m so uncomfortable with conflict and speaking up. . . if I’m in a situation where I don’t think my advice will be heeded I am unlikely to offer it. But I’ve tried to muster courage to be a sort of advocate when I can. In that specific example I did finally say, “I have trouble sitting on these hard chairs; have you tried one of those squishy things they can sit on?” (I’ve seen them at the school.) The teacher shrugged it off with a, “We’ve tried everything” (not true) and resumed firmly demanding he sit “right” in the chair, threatening him with the weighted lap pad instead of offering it as a good thing.
Situations like that are difficult, because I am a guest in these classrooms and it is not my place to tell the teachers what they’re doing wrong. . . I’m there to explain interventions that work for my client and model them. And like I said, I am uncomfortable. I’m too afraid to say things that will cause discord or bad feelings, since I have to be around these people every day. I was yelled at once at work while trying to implement an intervention and nearly cried; I was terrified of seeing the person again. Although I tried to act normally around them I was also very wary. So I have the internal conflict of watching treatment I strongly disagree with but being afraid of trying to change it.
Here is an example of what it’s like to *see* what the people in charge do not see when an autistic student is acting out. Her writing powerfully conveys the feeling of heartbreak and helplessness I often feel in such situations. – “What I Saw” by AutisticChick
On Failing Kindergarten
I’ve only read a few of Matt Walsh’s posts and I don’t agree with everything he says. But I really liked most of what he says in, “Help, doc, I’m bored by boring things. I think I’ve got the ADHD!” I agree that medication is over-prescribed, but I think he’s a little too strongly anti-meds (for an example of a family who dramatically benefits from meds, check out the BBC documentary Living with ADHD).
Here’s the main point of this post summed up in two quotes:
What if — this is a big IF — what if people are all, like, different?
Don’t stop reading yet. Seriously, think about it. What if there ISN’T actually some preordained mold of behavior and thought in which we’re all supposed to fit? What if it’s OK for some people to be a certain way, while others are another way, and still others are an entirely different way? What if some people are active, and some people aren’t; some people are creative, and some people aren’t; some people have a lot of energy, and some people don’t; some people are daydreamers, and some people aren’t? What if — again, HUGE if — but what if we tried to find a place for the unique qualities of all men and women, rather than attempting to chemically eradicate entire personality types simply because they don’t gel with our artificial societal constructs?
What if we stopped trying to make our kids “normal,” and instead encouraged them to be exceptional?
Could it be that our kids are distracted because they’re surrounded by distractions? Could they be overstimulated because they’re surrounded by stimulation? Could they have trouble paying attention in school because school is tedious and boring?
I really loved that second quote.
I also read one of his rants about public schooling and homeschooling; again, I don’t agree with everything he says, but he made points that resonated and further weakened my already shaky faith in the public school system. And let me tell you, I have had the privilege of working with some amazingly wonderful educators. Ever since I was a child I have had respect and affection for good teachers, and it continues to this day. From what I’ve seen, the school I mostly work in right now is a great school, at least by the standards of the schools I have seen or attended. However. . . more and more I’m seeing how it really doesn’t work for everyone. I see kids falling through the cracks, because even the best teachers are only human and have too much on their plates (crowded classes, heavy workloads, lack of parental involvement, etc). I cannot emphasize enough how much I respect most of these teachers; I honestly cannot think of a single negative thing to say about my client’s second grade teacher, for example. But when I’m sitting there trying to get this kid to stop his noisy stimming while the class is taking turns reading, I have to wonder, “Why are we here?” He pretty much never gets anything out of the lessons in the gen-ed classroom; he learns and works much better one-on-one. Most of our time in the gen-ed room is spent trying to keep him quiet and on task; if he doesn’t have a specific task in front of him like a worksheet it’s rough. So why is he there? To try to learn how to sit still and quiet and listen to group instruction? That leads to the next question – Why? Does he really need those skills? I mean, what kind of additional education is he going to seek in the future, and what kind of job? When I think about it, most jobs don’t involve the kind of “skills” he’s supposed to be learning in school. I am all for him spending time with the gen-ed kids, not only for his benefit but for theirs. We didn’t have any kids like him in my class growing up. In fact, I have so little exposure to individuals who have labels like ID that when I first started going to a Life Skills classroom with another client I felt VERY uncomfortable around those kids, much to my shame. But the kids in my younger client’s class – they accept him. They are willing to help and prompt him and pester him for high-fives. I’ve seen bright and social young boys give up doing something “normal” with their friends at recess to interact with my client and help him practice things like tossing and kicking a ball – and this without any adults suggesting they do so. In those moments I feel hope for the future.
So, what are the next steps? Well, my first personal step is switching gears and going back to college to study Information Sciences and Technology. After we discovered my place on the spectrum, my mom encouraged me to look at career fields that would be a better fit for someone with Asperger’s. I start classes next month and will continue working as a TSS part-time for as long as I can manage doing both. Another step has been slowly “coming out” at work. I didn’t make a big formal announcement, but if I’m chatting with someone about a student’s specific behavior I will say something like, “I can really understand why he has a hard time with the noise in the cafeteria. I started wearing earplugs in there! I’ve come to realize that if there had been more awareness when I was a kid I would have been diagnosed, myself. Loud noises like that are overstimulating to me and make me feel really anxious. Do you think he’d tolerate some kind of ear protection for in there?” I don’t make a big deal about it, but I want them to know I’m giving advice not just as a trained TSS but as an autistic person. An also-autistic person speaking for and defending the rights of these autistic kids who don’t yet know how to speak up for themselves. Which leads me to a third step – promoting true “Autism awareness” by encouraging autistics to raise their voices and NTs to start listening.
I’m typing this and I haven’t even finished reading the post – I like it that much.
My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.
Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter. Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.
Because sensory issues play a big part in our lives, we often prefer specific foods. Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries. I am an adult. I know what I like and what I don’t.
I finished reading it and wanted to shout, “Amen!” and show it to everyone I know. Here’s my first step:
“Sticks and stones can break my bones, but words can never hurt me.”
There are many words that still haunt me. Taunts about my weight that started in late elementary school. Words of social exclusion from the mean girls. Dismissive remarks from relatives. A girl I considered my best friend suggesting I just kill myself. (I pretty much remember the exact phrasing of that one.)
I remember talking to a new friend in high school and explaining that my group of girl friends didn’t care what I had to say. “Oh, I’m sure you’re just imagining things,” he said. “No, I had the feeling that they didn’t want to hear me, but then they actually said, ‘Schenley, shut up; we don’t care.'” I thought that was pretty convincing proof that my intuition had been correct. I don’t remember him having a good response to that.
I recall a period there in high school where I felt like I just couldn’t win. If I was in a good mood and talkative, they would yell at me for being annoying. If I kept quiet, they would yell at me for being depressed. It was only in the past few days that I started to realize the direction of the correlation – sure, sometimes I was quiet because I was depressed, but I think more often I was depressed because I was quiet.
On a recent episode of The Big Bang Theory, Sheldon is telling Amy about his “Which new game system to buy?” dilemma in a very animated and agitated fashion. Poor, patient Amy just wants him to shut up and pass the butter, and in exasperation feigns interest. Despite her doing this extremely obviously, Sheldon is oblivious and just gets more enthusiastic. Sometimes I wish I could be as oblivious as Sheldon. Instead, I have learned to pick up those social cues of disinterest and annoyance. And when people aren’t interested, I can generally shut up. But this comes at a cost.
I’ve started to notice that this constant tongue-biting is truly damaging to my mood.
I’m suppressing my own thoughts and feelings. I’m telling myself they aren’t worth sharing. When these are feelings of excitement or joy, that is pretty effective at squelching the happiness.
As an Aspie, I have special interests that bring me joy. I love to spend time on/with these things, I love to think about them, I love to talk about them. The problem is, other people generally don’t find them as interesting.
It hurts when others aren’t interested in something I’m passionate about. I mean, if the person is someone you care about, shouldn’t you at least listen out of care for the person, if not the topic? Whenever someone shows a genuine interest in what I’m talking about I can feel myself light up. Like when a friend’s husband asked follow-up questions about how paper-pieced quilting works instead of just nodding and smiling.
It’s great when I have someone to share an interest with, when I’m allowed to be excited and they’re excited in return. My dad and I can rhapsodize about music and movies (and script lines at each other – yay acceptable echolalia), my sister and I can ramble on about our Sims or gush about Glee, a friend and I can quote The Office to each other and even went to The Office Convention in Scranton years ago, etc. I treasure those relationships and moments when we can be ourselves and share each others’ joy. There’s even research to back up the idea that sharing joy with others is a good thing.
Other times I keep my mouth shut because I’m feeling down and don’t want to dampen the other person’s mood, or what I have to say is nothing new and I feel like a broken record and feel bad for the other person who’d have to hear it. I suck at lying, so I just don’t talk. But that doesn’t help me feel any better. And in those moments I long for someone to reach out to me and be honestly willing to listen.
The Combating Autism Act (CAA) is up for re-authorization in the US Congress and ASAN is asking autistic people and their families to let Congress know that the CAA needs to be reformed. If you can want to know more, you can read ASAN’s message. There is a Twitter campaign taking place today and a flash blog next week to raise awareness and encourage people to contact their congresspersons in Washington.
Because I’m a bit of a wonk, I read the CAA last night and then I read the GAO’s report on the CAA. Fun times. One thing that struck me is how autistic adults, if they’re mentioned at all, always come last. When it comes to autism policy and research, we’re barely an afterthought.
But that’s not really what this post is about. The theme of the actions around the CAA is #stopcombatingme, a reference to how damaging…
I started this post weeks ago, but then I put off finishing it. It’s a painful topic, and I was having a hard time organizing my thoughts without rambling. But I don’t like leaving things unfinished, so here I go.
I’ve been feeling lonely lately. Not that it’s a new thing; it kinda comes in waves. I think this latest time was really instigated by having free time again. For a while I was chatting online daily with a friend, and when that ended it was sad and a hard change in routine, but I became so very busy and stressed that I simply didn’t have time to feel lonely. I was too busy with my work schedule, and a busy season of my photography business, and the craziness of trying to make Christmas gifts and visit people. But all of that activity cut off abruptly. . . and although I was thankful to have my down-time back, it also increased my feeling-down time.
My thoughts for this post have been all over the place. Do I go into the feelings of childhood loneliness? Do I explore the ways I made friends who lasted? Do I share the heartbreaking times where I failed to make friends in new places? Where do I begin with all of this?
Since graduating from college I have moved a lot. I moved 7 times in 6 years, in fact. Have I mentioned that change is hard? (Rhetorical question – I did). I was hired as a nanny and then had families’ financial situations change, or I moved in with people knowing the situation had to be temporary. I moved back in with my parents a few times when my work/living situation had to change, because they are awesome and supportive. Each time I moved to a new place I really did try to meet people. I’d find a good church and then step outside of my comfort zone to go
to a young adult ministry event, or join a women’s Bible study, or attend a small-group event to join a group. And I met some really nice people this way. . . but I never made a real friend. And I don’t know why. It seemed like most of them already knew each other, had a history, had their own relationships and busy lives. They were friendly to me, but I never felt truly initiated into the group, and was rarely invited to do things outside of the scheduled event. And I’ve never known how to get in.
Looking back, it seems like I needed an insider to pull me in. Junior high sucked. I’m sure eventually I’ll write more about bullying, but for now I’ll just say that those years were the worst of my life. I hated going to lunch in junior high (and I love to eat), but I didn’t know how to change where I sat. Then one day my badminton partner in gym class invited me to sit with her at lunch. I long referred to her as “my angel” for rescuing me in that way. By inviting me to eat with her, she provided me with the “references” I needed to get in with a new group of girls. This group (though a bit fluid over the years) remained my social group at school until graduation. While far from perfect, we did share a lot of fun times, and for that I am thankful. In fact several of us got together for a private “un-reunion lunch” 10 years after graduation (I had *zero* interest in attending my class reunion); I truly enjoyed seeing them again after so many years. Yet at school, especially at the end, I often felt lonely, even within this group.
I’m not really sure at what point in my life I started to feel different. I felt different from the other girls because I was a tomboy. Everyone always called me “smart” and it set me apart – when I got older it made me sad that most people would sign my yearbook with something like, “You’re so smart!” instead of something about being friends. In high school I felt different because I wasn’t dating (not my choice) or interested in partying (my choice based on faith).
I loved the times I had a best friend. If I didn’t, or if they weren’t around, I always dreaded the times at school where we were directed to pick a partner or group. I knew that if the number of friends wasn’t right (3 of us and it was 2 to a bus seat, for example) I’d probably be the one left out.
In the collection of stories/essays/poems Women from Another Planet?, Jane Meyerding tells a story that really resonated with me. She writes about going to Girl Scout Camp one summer, and how she participated and enjoyed every day there. It wasn’t until the overnight camp-out that she realized something:
The other girls had become friends with one another. Alone there, with no adult present to direct us, they chatted and whispered and laughed and interacted with seamless ease. How did they know what to say? They weren’t talking about anything, and yet they talked constantly. My conversation was limited to specific subjects, not including anything as nebulous as girltalk or smalltalk. Moreover, they seemed to know each other in a way they didn’t know me — and I certainly didn’t know them. I had been with them as much during the summer as they had been with each other. I had done everything they had done (as far as I could tell). And yet I was a stranger there. The only stranger in the tent. I realize now that one or more of the other little girls in that tent may not have been happy and socially successful. But all of them knew how to put on the act. They may have felt lonely. They may have felt inadequate. But they knew–even at eight years old–how to behave in a social situation.
(p 158, 159)
It’s painful to not understand why I’m not accepted as a friend at times. The people who become my close friends all tell me I’m a great friend, but most people must not see what they see I guess. I remember one time (that I will keep intentionally vague). I was in a room with a girl I thought I had a good relationship with, and she stormed out of the room appearing very upset. I had a feeling she had gone to talk to girls in another room of the house, and since I had a question for one of those other girls I went over several minutes later. Sure enough, the first girl was there, and it was clear she had been crying. Later she mentioned it within another group context and I asked about it, and she explained she had fought with someone. I never knew why she chose to seek out the other girls instead of talking to me, since I was right there. But it hurt.
We flourish much better in an environment where the emphasis is on academic achievement and not socializing. Of course we need to learn to socialize, but through shared interests with like-minded individuals, not by being thrown to the lions. Emotionally, we require an atmosphere of tolerance and non-judgement.
This was definitely true for me, going to Grove City College. People were actually nice to me. It was so weird, but wonderful. And one of the best things that happened there began on the first day. The college organized “mentor groups” to help us get settled in and meet each other. I entered that first day with the determination to try harder to make friends, and I was acting much more social and outgoing than was normal for me. But when I sat down in the grass with my mentor group I saw an individual who looked as shy and uncomfortable as I truly felt. We were both wearing Christian rock t-shirts, which gave me a chance to strike up a conversation. I put forth a little extra effort to initiate with her. It didn’t happen for a while, but she became my best friend, and still is after a decade.
Like a lot of people on the spectrum, I often feel more lonely when I’m surrounded by people than when I’m truly alone. I think it’s the seeing the NTs interact and feeling so unlike them. I read one person (I’ll try to find the reference) describe it as feeling like being separated by a pane of glass, being able to see the interactions and not really join them.
I get frustrated when I hear NTs generalize that autistics are “anti-social” or “loners.” In fact, I heard someone who works in my field say, based on her experience with an autistic close relative, “They don’t really make that ‘human connection’ with other people.”
The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening. Whenever I overhear someone remark how much I prefer to be on my own, it makes me feel desperately lonely. It’s as if they’re deliberately giving me the cold-shoulder treatment.
A few weeks ago I was riding in the car with my family. Sitting in the backseat, I gazed out the window at the dark wintery scenes. I noticed a feeling that I recognized as familiar. As I saw each house, with warm light seeping through the curtains across the cold darkness between us, I felt pangs of longing. I wondered why. Maybe it was a metaphor created by my soul.
In the beginning, God created the heavens and the earth. Now the earth was formless and empty. . .
And after he made the light, earth, and animals, he said, “Let us make man in our image.”
Being made in the image of God means we get a lot of his attributes, like the ability to love, and in my case, the desire to bring order out of chaos.
Babysitting a few years ago, I was sorting their cars… it was neater, but one of the kids drove through them.
If you saw my bedroom floor or the room where I spend most of my free time at home, you would never think, “Wow, she has an OCD-style desire for order and organization.” A few months ago I read a blog post that helped explain my seemingly-paradoxical messiness while loving order- a few quotes:
One thing about the autistic spectrum is that the brain doesn’t automatically prioritise the important things, and filter out the less important, which typically-developing brains do all the time to prevent overload. . . .
Also, the autistic brain can have difficulty with sequencing (this is an aspect of dyspraxia, which commonly co-occurs with Aspergers). Sequencing involves both prioritising and being simultaneously aware of all the actions in the sequence while giving priority to one at any one time. This creates a sort of mental overload. It requires a good working memory – that is, the ability to keep several things in your mind at one time as you work with them – and people on the autistic spectrum often have difficulty with working memory.
Big tasks and projects always involve prioritising and sequencing. The advice people always give is ‘break it down into smaller chunks’, which makes sense in theory, but in reality involves deciding which chunks to break it down into – again, another prioritisation thing. Another aspect is that in deciding upon chunks, you often don’t know until you start on something what exactly it will require, and how much time will be needed. For me, this is a very overwhelming factor – it is about going into the unknown, and maybe getting lost there.
Some people on the autistic spectrum have a spotlessly tidy house, and diligently keep it this way. I would love a spotlessly tidy house, but I get frequently overwhelmed by ‘stuff’ in my house. I call it ‘stuff’ because most of the time I’m barely aware of it as it accumulates and creates mess. I will be doing something – and whatever I’m doing requires me to take things out. And I like to lay everything out so that I can see it – otherwise I forget it exists! I leave it out because I think I may continue doing it – and then forget about it and bring something else out. Before long, there is stuff everywhere – overwhelming stuff, and I don’t know where to start and I have forgotten where most things were kept, and perhaps where they were kept wasn’t a good place anyway and I need to find a better place, and there are some things which maybe I should throw away, but that’s a big decision, and I don’t know if I can make the correct decision.
Another thing I struggle with: “Context and non-transference of behavioral routines.” I totally identified with this post – she basically says that if you think of something you need in the car, you’ll forget to get it when you’re in the house. That reminds me of the study that shows that walking through doorways causes forgetting. Yes, that was a real study, and I find it simultaneously amusing and validating. Recently I’ve learned to set reminders on my phone for specific times, such as when I know I will be completely in the door and settled after arriving home (because, as we just discussed, if I’m reminded in the car or driveway I will forget by the time I reach the house and can do something about it!). I got a new iPhone for Christmas and I’ve found that Siri is wonderfully handy for safely setting a reminder like this while driving.
And now for today’s story.
A few times a day I go down to the basement to fill up my water bottle from the extra fridge and do other miscellaneous tasks. Last week I reached my breaking point with the state of the shelves at the top of the stairs (icing and mustard and soup and jam all together on a shelf- chaos!). I had organized it a long time ago, but the rest of my family doesn’t have the same compulsion to *put things in the proper place* that I do. So I decided that Saturday morning I would tackle that pantry cupboard. This happens every once in a while. My mom’s fabric stash in the neglected sewing room, the children’s books on the living room shelf when I was a nanny, the spice rack, even my current client’s DVD collection – if there is a group of related objects that are in a designated area and there is no discernible pattern or rationale to their placement, I’m going to react badly. It could be a quick fix: “Why are those two Curious George movies not with the other 5? I need to move that…” It could be something I’m not allowed to tackle: “No, you can’t organize my fabric until you help with more important things around the house.” (What on earth could be more important than sorting the fabric so all of the blues are together, and all of the flannels are in one spot. . . never mind the fact that nobody ever sees that room. I still get a little anxious thinking about that. It was a weird experience when Mom told me I had to wait, like a psychic pain.) Or it could be a job that takes all day.
I cleaned out the pantry shelves, organizing and tossing expired goods as I went. I then reassessed the layout and made some practical adjustments. When I was done, I was in the ZONE and moved on to the next cupboard. And the next. It was a great example of autistic inertia. . . though unexpectedly having to deal with a pantry moth infestation used up more spoons than I had expected to need for the task (inertia? spoons? read here if confused). It was one of those times I was so focused and active that I forgot to eat and became shaky.
One topic that occurred to me while cleaning was stimming – while grossed out by the pantry moths I frequently shook my hands or rubbed them aggressively. I’ve found that since recognizing my autism I’ve been more aware of my stims or desires to stim, and also more willing to embrace the movements. So if I’m at home in my kitchen and really excited about how the organized cupboard looks, I’ll let myself jump up and down or flap my hands briefly. Those are harmless and serve a purpose to my body and brain. We see nothing wrong with an excited child jumping and clapping – when does it become unacceptable for adults? Hey, it’s still acceptable for “big” excitements like being on a game show (Have you ever seen The Price is Right? Those people are always clapping and jumping up and down). So maybe it’s just NTs not understanding that sometimes little things can make us feel *that* excited. I’ve also noticed times where I subconsciously redirect the desire to stim. For example, in the noisy school cafeteria one day I became aware that my body had the urge to rock. I recognized it and allowed it to be suppressed, and then noticed that my leg had immediately started bouncing. I don’t ever recall consciously redirecting that desire to a more socially-acceptable stim, but there it was. I’m a frequent leg-bouncer, and assumed it was restless-leg syndrome, but now I know that it’s actually a stim.
But anyway. . . I felt much better after the organizing, and my mom was thrilled.